Have you talked with Dr. Afrin about your daughter? I don't know if he helps with children or not, but I do know that Dr. Castells (in Boston) does. She also does phone consults with patients whom she thinks have a mast cell disorder. Perhaps you could hook up with her and go from there?

Parents of mast cell kids: do you have any suggestions? What did you do to get started in the right direction for your child?

I'm not sure I have a lot to add but as a parent of a child with MCAS I just wanted to say that you are not alone, you are in great hands with Dr Afrin and with the support and information you can find here. There are plenty of challenges in dealing with this, but you are already on the right track. So try not to be too overwhelmed and panicked by it, just do what you can to learn more about your own condition, use what you are learning to try to figure out where to go with your daughter, and find the medical care you need to establish what needs to be done for her.

On one hand you have an advantage in understanding her symptoms and needs more quickly than many of us, because you already know about MCAS and have access to information that it took me years to discover. On the other hand it is important to have your daughter seen by a doctor who can address her needs and consider the range of possible causes for her symptoms. Her symptoms may look a lot like yours, and may be following a similar pattern, which you will naturally see while your own situation is prominent in your mind, but her own case needs to be reviewed thoroughly and independently by a paediatric specialist. Hopefully Dr Afrin can point you in the right direction. I think I recall someone previously mentioning here that he offered to refer on and then consult with the paediatric team at his hospital.

There is a category for parents on the forum, you might like to post your daughters story there for specific questions and discussion. I have received such great support and encouragement here, I hope that will also be your experience.  Hang in there, it is never easy seeing our kids in pain and having their childhood years impacted by something like this, but you will find the resources  you need to help her through this, and you will have the understanding of others who know what you are going through.

As for practical things that helped my son, he responded well to ketitofen, antihistamines, and a short course of steroids for immediate relief for acute flares. In time I discovered the low histamine diet and that has made a big difference too. Keeping a detailed diary of food and symptoms is also a good idea, including as much extra information like activities and exposure to other things that could be triggers. It is hard to remember everything, and the more you learn about potential triggers the more detail you can include, but anything you can record will help.

Some of the most encouraging advice I have been given is that you know your child better than anyone else, trust your instincts in spite of any discouragement from people who doubt or discredit your concerns, and keep on advocating for her until you find the answers you need. It may not happen as quickly as you would hope, but you will get there. Please feel free to ask for the help you need here, or send a pm if you prefer, be it information and explanations or the encouragement and moral support when you are discouraged or overwhelmed by it all.

Ruth

Have you and your daughter been checked for parasites? I wonder because both of you started having symptoms around the same time.   Parasites can and do set off people's mast cells.  My daughter and I had strongyloides stercoralis, and it caused both of us to have major GI mast cell problems and other symptoms, too.  Parasites are endemic to some areas of the U.S., or they can be picked up in other countries.  We think we got it in Mexico.  We only found out because her symptoms were so strange that she went to Mayo and was tested.  Once she found out she had it, we were tested, too.  3 out of the 4 of us had it!  Treatment was simply antibiotics.

Just a thought....      Also, have you been to MastoKids.org?   There might be some good info there.  Hope you both feel better soon!

Glad you are finding some relief for you and your daughter. I think you probably need to defer to Dr Afrins advice regarding what to try next. He knows your particular story, and he is well versed in this condition. For my son I would say probably Zaditen has been most effective, but he has only just started on Singulair so I don't yet know if this will prove to be helpful. In addition, the low histamine diet has made a difference, and avoidance of environmental triggers, including personal care products like toothpaste, soaps, shampoos etc. Those are changes you make any time.